Overcoming Sensory Processing Disorder

Can you overcome sensory processing disorder?

I hope so.

I know it will be a long process, nothing that we will magically overcome in a few weeks or even months, but instead, it will be a journey of years of learning about the way my son's body, brain and emotions operate, and finding the best ways to cope with his sensory processing challenges. He is not quite 5 years old yet, but after a few years of therapies and reading a lot about the subject, we have learned a thing or two, and I would love to share it all with you.

If you want to read about the basics on SPD (what it is, types...), please check out this post I wrote a few months ago on the subject. Also, you may check out this overview on how my son Patrick is specifically affected by SPD (you may find more than a few similarities to your child!)

My son is what in the world of SPD is called a "seeker". This means, his body is constantly looking for physical and vestibular input. He is often licking things (I know, gross!) He loves to chew on his thumbs (not baby sucking, but rather hard-chewing with his molars.) He is often pushing, hugging hard, throwing things, bumping into things. He loves running and can walk for hours. He likes performing physical work (not like I have my toddler/boy working on the yard, but he enjoys helping me vacuuming with a light vacuum and helping me carry the groceries). Enjoys clashing and splashing water like no other kid I know. He sleeps with heavy blankets. He prefers to eat with his hands. He likes to lick things (I know I said that already, but really, it's is that often and drives me that crazy!)

His auditory processing works completely in the opposite way, though. Loud, unexpected noises make him scared and even panicky. He can get a serious panic attack at the bark of a dog or the sound of a fire alarm, not often, but it has happened.

We think we are prepared for the times these will happen again in the future, however, there are times when he will experience certain triggers for the first time that will cause a panic or at the very least a meltdown. Then we will need to learn to manage these new feelings and reactions. When you finally think you have everything under control and your child is doing well for a few months, then there is something new that will remind you that this is something that can't be cured, but can only be controlled, and it will likely take you a good number of years. I'm hopeful that by the time he is a young adult he will know how to cope and respond appropriately to new situations.

But right now he is just a child. And when kids like Patrick get a 'sensory overload' it can get really rough for them, and also for the parents and the people around. In the case of 'seekers', when they get a sensory overload (public places are the most common) they begin to crave more than ever for that physical input. If there is anything around them that they can get their hands on, they will push it, or throw it, or destroy it. They may hit people, and do things that look as if the child is 'misbehaving'. As the caregiver tries to discipline the child and stop the behavior, the sensory overload gets out of control, turning into a complete meltdown for the child (and often, feelings of frustration, helplessness and failure in the parent).

SPD is really serious stuff.

But it can be fun too. At least. you can try to make it fun.

On my next post I will share with you a list of things that we have tried AND have worked. Every child is different and not everything will work for everyone, I know this because we have tried other things that didn't make it to the list simply because they didn't work on my child, even though other parents or experts on the subject raved about them.

My suggestions include things we had to buy, to things we already had but discovered a different use for them. Activities, words, foods and services - all will be explained in the next post. Stay tuned! 

Are therapies really important?

Summer is almost over. My husband has been traveling for work for most of the time, so I feel like I haven't been able to do all the summer things I wanted to do with the kids. One of those things was to take them to the $1 movies Regal Cinema offers over the summer. We went only once, granted, it conflicted with Patrick's therapies on Tuesdays, and with mom's group on Wednesdays. Regardless, I felt like I could have made some accommodations to make it work, if only I hadn't been occupied with other things the past couple months. This week was the last week of the Summer movies, so I called to reschedule Patrick's therapy to the afternoon so we could spend the morning at the theater and enjoying a nice lunch afterwards. I introduced the $1 summer movies to a new friend I made recently, who joined us with her daughter, and now they can't wait for next summer to take advantage of the great deal.

After a busy morning, we headed to therapy. We have ran out of the number of therapies allowed by the insurance. We reached the maximum not even half way through the year. We had to reduce Patrick's Occupational and Speech therapies from twice a week to once a week because it would be too much money without the insurance coverage. I got so frustrated, hopeless and helpless days ago after talking to the insurance about the possibility of increasing the limit of therapies allowed. Of course their response was "not possible." My new friend had just asked me this morning if self-pay therapies were expensive, and when I told her how much we were now paying her response made me doubt if it was all worth it. She couldn't believe we were paying that much for only 90 minutes of service a week (1-60 minutes session of OT, 1-30 minutes session of SP).

I began to question it myself. Does he really need the therapies? Can I just get some tips online and from books and teach him myself? What if the improvement I've seen is due only to the fact that he is growing, and not that he is receiving therapies? Will he catch up on his own as he continues to grow?Are we just wasting all these money and our time? Will he regress if we stop the therapies? What should we do? Then we went to therapy, and God found a way to answer my pleas.

Because we rescheduled, Patrick got to see different speech and occupational therapists than the ones he usually sees. It's great to see he doesn't fight going into the sessions anymore, not even with these nice yet unfamiliar young ladies. When it was his turn for OT, the therapist came to take him, and I realized it was the same woman who performed his evaluation 9 months ago. I got back memories of that meeting: He didn't cooperate much. He cried and screamed at some point. He was either hiding behind me or all over the place. He couldn't perform most of the tasks requested. She had to cut the evaluation short because of his lack of cooperation, but she had seen enough. It was obvious that Patrick lagged behind on many areas.

I knew he was better overall now compared to 9 months ago. But I didn't realize how much better until today's session was over and she came to talk to me. Her face could speak for herself. She was in total awe. She said emphatically how much improvement she saw on Patrick. She talked about all the things they did and how surprised she was at the things he could do. He has improved by leaps and bounds... He still got that great aim when throwing things... He is keeping his hands open most of the time... He was able to balance his body very well on the therapy ball... He has gotten so much strength in his muscles... He was very focus in all the activities... He worked so hard... 

I had to stop listening and had to think about something else. I distracted myself with the kids around, because I didn't want to cry. It was hard not to. I had that expression when someone is about to cry, I could feel it, and I didn't want to show it. But I know she noticed, and I know it was not the first time she had seen this expression in a parent. After all, we are all there hoping for our kids to get better, and when we hear they do, we rejoice. Therapists must feel good, too, after all, they are the ones helping make these improvements possible.

I was reminded today of how far my son has come, how fast, and how much better he is because of his therapies. There are times when all I see is that gap between him and children his age, that I forget how much far behind he was before, and how much bigger that gap used to be. I had forgotten about the evaluation from 9 months ago, but I'm glad I was coincidentally reminded today about it, when I saw the therapist who performed it. I don't know how much longer will Patrick be receiving therapies. Next year, when our insurance starts covering again his therapies, I don't think we will request to go back to receiving services twice a week. I don't want to overwhelm him. He is just a child, not quite 5 years old yet. But I know we will continue to receive therapies for as long as he needs them and for as long as he enjoys them, and for as long as they continue to help him as they have all this time.

Busy with extracurricular activities (Part 2)

I talked on my last post about the swimming lessons and other classes that Patrick has been taking "mainstream". But there are 2 additional classes that he is taking over the summer that are designated for children with special needs.

Soccer:

Patrick has been attending soccer classes through a local program called C.A.T.S (Children's Adaptive Team Sports). They had a board bulletin about this at the place where Patrick receives private therapy. I called and they had already had the first class, but I signed him up regardless. I'm from Mexico and grew up playing and being a fan of soccer, so I can't wait to be a soccer mom. Due to Patrick's developmental delays and motor planning issues, I know he couldn't join other children his age on a regular class, so I was thrilled to find out about this special program, so close to my house!

The class is advertised for kids 4-10 years old. I wasn't sure how that would work exactly with such a wide age range, however, the skill level of all the kids is about the same. There are a couple older children with walkers, a couple other with Autism, and a couple other who, like Patrick, you couldn't pinpoint what exactly the health issue is, but you know there is a developmental delay. This class is perfect for him to help him build confidence and learn what is like to be in a sport team.

The instructors on this program are volunteers. Once I read a quote that said "Volunteers don't have extra time, they have extra love to give" and it's so true! We can't go around assuming that volunteers simply have extra time in their hands and this is why they do what they do. They do it because they want to do it, and they find the time to fit it in their busy schedules. I hope other parents elsewhere who are reading this start their own version of C.A.T.S. in their cities if something like this isn't available. It's a great opportunity for children with special needs that otherwise wouldn't have access to experience what it is to belong in a team and train and play regularly.

Music:

A good friend of mine talked to me about a great piano teacher her kids have, and said he mentioned once that he used to do music therapy for autistic children. She introduced us and he was so nice that we decided to give it a try. Patrick is not autistic, but sometimes he presents some behavior that can be considered on the spectrum. His sensory issues, his motor planning issues, his developmental delays - all can be helped with music classes. The instructor suggested to start with sticks and other instruments before getting him to practice piano, as he is still really young.

Patrick enjoys making music with the instruments. It's not easy to get him to follow a pattern but that's the point of taking music lessons. After the first class, the instructor gave me a few exercises to practice at home. I like this type of "homework" because it's so much fun and a great way to spend some quality time with my children. One of the observations the instructor made was to motivate Patrick to make more eye contact or at least make him "aware" of his surroundings. Since then I started to pay more attention to this and realized that indeed when he is playing an instrument he is into it so much he stops paying attention to anything else, and this is the reason why he won't even attempt to follow our patterns/rhythms.

When Patrick was 2, we used to attend a great group class called Music Together Vivo, which is offered in various cities across the United States. It's for children 0-5, and parent participation is encouraged. It was a great way to socialize and dance, sing and play instruments following a pattern. We were considering signing him up again because he really liked those, but when we got the opportunity to get one-on-one music therapy, we decided to give this a try and we are very pleased.

Busy with extracurricular activities (Part I)

Cooking!

Patrick struggles in new environments, specially if these are enclosed with a bunch of unknown people. If on top of this, Patrick is expected to perform in a specific way, like following instructions to color or sing, well, forget it, we will have a guaranteed meltdown or at the very least a hyperactive child whose body can't get enough input.

We have discovered that it's not because he doesn't want to be there, but something is triggered in his brain and then in his body that cause such reaction during these situations. He doesn't know how to conduct himself so he gets a little rough. By now I know that it will just take to repeat these "new" situations a couple of times and he will be OK the third time. Instead of preventing my son from this experience, I have learned that exposing him more to this, will help him learn to manage these situations better.

We were thinking about enrolling him at a Summer camp, but he isn't fully potty trained yet (almost there, though!) and also they require that the child separates from parents easily, and as I mentioned above, it's likely that the first couple days would be a nightmare and he would probably be kicked out! So we decided to instead sign him up for a few different classes with parent participation and hopefully next year he can enjoy the summer camp experience.

Patrick took swimming classes at the beginning of Spring. He loves being in the water, and I think swimming is a great way to practice coordination. You can tell it's challenging for him to figure out how to coordinate his arms and legs to make the motion of swimming. But what's the point of taking classes if it isn't to learn? Right? Right! So he will get there, he just needs to practice more.

Swimming class

Due to his low tone in the mouth, Patrick kept his mouth open almost the whole time. The instructor and my husband kept telling him to close it, and he would try it but few seconds later he would go back to opening the mouth. I wrote a note to his school teacher saying P was taking swimming classes, and I made mention of how he kept opening the mouth. She wrote me back saying they made it the topic of the day, and they told the kids to remember to "zip" the mouth when they are in the pool or the tub. Patrick came home showing me how to zzziiiippp. Have I said how much I like his teacher?

When the swimming classes were over I wasn't sure what else to sign him up for from all what was available. So, we signed him up for a "variety zone" class at the near RECenter. It was 10 classes that included a taste of gym, cooking, gardening, arts and crafts, among other things.

First 2 classes were an absolute nightmare, but I knew that could be the case so I stood strong and patient! This time, I was prepared for the crazy behavior, and I just prayed that the instructor, the other kids and the other parents wouldn't be annoyed by him. Aside from one mom who gave me nasty looks at the beginning, all of them were very nice about it. He attended 45-minute classes once a week. Gardening and cooking were his absolute favorite classes and I'm planning to sign him up for just the cooking class this fall, and gardening class next spring. 

Cooking class

For the summer, Patrick will be taking 2 classes geared towards children with special needs, and I will talk more about it on my next post.

Overcoming Behavioral Issues: Talking to your children about their challenges.

A few weeks ago Patrick had a play date at the house. At some point, Patrick saw pretzels on the counter and he asked for it: Paqui wants Patses (meaning Patrick wants Pretzels -occasionally he still refers to himself in third person). One of his friends asked me what was Patrick saying, and when I told him, he said "Why did he say it like that? Why is he saying patses?" Patrick just looked at him and stopped talking, I could tell he became aware he wasn't speaking right and got shy. This caught me off guard, so I just said something like "Because everyone says things different... I think that's a fun way to say it" and I moved on, giving everyone pretzels.

Later that day, my husband got home from work and we went out to eat. On the way there, I talked to my husband about the incident, and we talked about a few other issues relating to Patrick's therapies. I honestly believed the kids were not paying attention to what we were talking. Once we got to the restaurant and my husband tried to get Patrick out of his carseat, Patrick turned his head away from his dad and avoided looking at him from then on. My husband immediately knew that Patrick had heard the conversation and he was feeling either embarrassed or upset, or both.

That weekend we went to see a theater play for children, but Patrick was very sensitive. He cried a lot and asked to leave when he saw all the people. We were able to convince him to stay and eventually he enjoyed the show, but he had to sit on my lap the whole time. On Monday he had Ocupational and Speech Therapy. We were told that the gym they usually work on was being used, so they had to go to a different one. Big mistake.

He threw a fit. He had an absolute meltdown and cried for so long. It was hard for the two therapists and myself to calm him down. We had to do a lot of negotiating with him to eventually get him to cooperate and play at the session. I had to stay with them the whole time. He began to enjoy the therapy the last 10 minutes or so, but then it was time to leave. Another big mistake. He began to scream and throw things and cry. He didn't want to leave, but he didn't want to be there either. He began to run around the hallways crying out loud. The therapist and myself were trying to reach him to calm him down but it was impossible. He found an empty gym and so he ran across that room, to the opposite corner, where he found a place to hide and once in there, he threw himself on the floor and just cried. He cried and cried and cried. I had never seen him like that. He wasn't throwing a fit, this was different. I could see my son hurting, I could see my son suffering and crying his heart out.

I let him cry for a little awhile. I knew he needed to get it out, whatever it was that was making him sad, and given that his speech is limited, and hitting people or things isn't really his thing, I figured tears would do it for him. He then was able to come with me and leave that place. I couldn't wait to leave the place. He left for school OK and he was calmed the rest of the day, but he was a little sad, too.

On Tuesday we had therapy again. The therapist made sure the usual gym was available this time, so he was able to go in by himself. At the end when the therapist came to talk to me about what they worked on during the session, Patrick got upset and started to push his brother and grabbed a trash can and threw everything out. He was running and pushing things, just trying to grab my attention I guess. He was very upset that I was talking to his therapist. We had been doing this for 4 months now, and never had a problem like this.

Couple days later we went to try out one of the MyGym classes for toddlers. Patrick was a nightmare there. At first he didn't want to participate on anything. Once he was comfortable enough, he began to push things, he wasn't listening to me much, he was playing rough, and when it was time to leave, he had another meltdown. He cried for a long time. I'm a short person, and Patrick is a 4 year old boy who is actually on the tall side, so controlling his crazy movements isn't precisely easy. It's winter time so there I'm trying to put his shoes on, jacket on, gloves, hats, and do the same with his brother but it's impossible. I'm completely on the floor trying to control my child. Parents come and go and I can tell everyone is giving us the look. It's Thursday and it's been like this all week. Complete meltdowns Every.Single.Day. At this point I'm emotionally exhausted.

What's happening to my son?

We talked to his teacher and the therapists about this new behavior. By "mistake" we attended a support group for parents of children with Sensory Processing Issues (I will talk about this on my next post) so we talk to those parents about this, too. My husband and I talk about all of this over and over trying to figure out what to do. Also, we recently began to watch the TV Show Parenthood -and coincidentally we watched the episode where the parents realize is time to talk to their child about his Asperger Syndrome and asked the psychologist for help. Everything above got us to the conclusion that it was time to talk to Patrick about his challenges.

It became obvious that he is now self aware that there are a few things that he can't do like everyone else. It's obvious that his behavior is telling us that it's bothering him, so we need to talk to him about it. But it's also obvious that he is just a 4 year old and we don't want to burden him with information he may not only not be able to process, but also that may make him too self-conscious and with low self-stem. We are told we need to talk to him, but it has to be very informal, very short, very basic, and in a very loving way. I mustn't cry when we talk so perhaps is best his dad says something. And he does.

While I'm serving dinner, I overheard his dad asking him why he thinks he goes to "fun class" (therapies), Patrick doesn't answer. My husband tells him "We all have things that we are good at, and things we need to practice more. You need to practice your speech a little, but you will be fine in no time because Ms. Morgan and Ms. Kristin will help you with that. Maybe Robbie some day will need to go to fun class, too. There are things you can do better than Robbie, and things Robbie can do better than you, and that's OK, we all are constantly learning. We are so proud of how hard you work and we love you very much."

Patrick only said OK. He acted like he didn't care much about that talk, but he did. I know it, because the meltdowns disappeared after that. We understand now that he has difficulty controlling his emotions, or knowing how to react and what to do with his feelings. I know, too, that he will have more episodes like this one as he grows and new feelings arise. But my mental attitude will be different. I won't let negative thoughts get the best of me. I'm my son's biggest support, and if I'm not 100%, how can he be 100%? I won't worry about what is about to come. For now, he knows we got his back and we love him, and he knows we believe he is perfect just the way he is. He knew all this before, too, but sometimes he will need to be reminded, and that's OK, because we are his parents, and this is what we do.

Overcoming Behavioral Issues: Sensory Processing Disorder (How is Patrick affected?)

As I mentioned on my last post, Patrick was evaluated by an Occupational Therapist, who tested not only his fine and gross motor skills, but also his Sensory Processing Skills. Patrick's evaluation displayed scores in "Some Problems" range with Touch and Body Awareness; "Typical" performance range with Social Participation; and "Definite Dysfunction" with Vision, Hearing, Balance and Planning and Ideas.

Vision and Hearing.
I will start by addressing these areas, particularly "hearing", because it was the first problem we discovered. Since Patrick was only a few months of age, we noticed he was extremely sensitive to loud and unexpected noises. We know some babies are afraid of the vacuum cleaner, for example, but Patrick used to cry totally freak out to noises like the faucet on the bathtub, a blender, doorbell, music or TV that are unexpectedly turned on, animal sounds, and even stuffed animals noises, among many other things. As Patrick grew older, his tolerance to some of these noises got better, however, his over-responsiveness to certain unexpected loud sounds continued and began to concern us.

He was also very afraid of small, fast-moving objects and animals. We thought maybe it was because of his eye disorder. Patrick's eye condition (Ocular Motor Apraxia) make him have difficulty tracking objects moving horizontally. Imagine one year old Patrick seating on the floor, then suddenly a dog comes barking and moving around. Patrick not only can't run away (or even crawl -due to low muscle tone), his eyes also have difficulty tracking the dog's movements. So what does Patrick do? He gets afraid of being attacked without being able to defend himself, so he starts having a panic attack. Perhaps baby Patrick believed stuffed animals could voluntarily move, and that's why he used to be afraid of them, too. This is how my husband and I made sense of the situation, but we didn't know how to help him avoid getting panicked.

When he was almost 3 years old, we talked to his OT about all of this and she was a life saver. We used to grab the doggy (or whatever was making him afraid) and be like "look, it's fine, it won't do anything to you, look, I'm petting it, you can pet it too! Which she told us was an absolute mistake. The thing is, Patrick is in panic mode, his mind is so far away that he won't reason to "it won't harm you". So the OT said we should not force the child to confront his fear right on the spot. Instead we needed to respect his fear, and say "bye talking bear, byeee" and put it away. Eventually he associated the "bye" with taking the scary things away, and so he began to say "bye" on his own to things he didn't want. All we had to do was to listen to his "bye" which in other words meant "take that scary thing away from me" and so we did just that.

It made a whole world of difference. He could be in control of the situation, and he knew we would respect his wishes. If we went to the Zoo, he would be so excited walking towards the animals, but at a certain point he would say "bye elephant" and we just knew we were getting too close to them, so we would stop right there. Any step closer could mean total Panic. We knew it, and he knew it. So we would just admire them from the distance and move onto other animals. As he grows he gets more familiar with them and the distances get reduced. He is just very cautious all the time, but warms up to anything eventually.

Touch and Body Awareness
It took a long time for Patrick to stop mouthing toys and other objects. He was waaay passed that stage, but he continued doing it. Eventually he replaced the objects with his thumbs, and so now he likes to put each thumb all the way back to each set of molars and chews on them while he is watching TV or trying to fall asleep. He is often sticking out his tongue or pushing his lower teeth with it. We know now that it's all about seeking that sensory input in his mouth. We use chewy tubs and seem to help.

He puts a lot of pressure when drawing, and often times doesn't realize the strength in which he pushes, opens, pulls or moves things. He grasps objects so tightly it is difficult to use the object. His hands are always making a fist, not because he is ready to hit someone, but it's just the way he moves around.

His body in general is sensory seeker. He loves standing under the shower just to feel the water in his body. He doesn't sleep unless he has a somewhat heavy blanket on him. Ball pits are his f-a-v-o-r-i-t-e thing in the world. He loves throwing things (and he has amazing aim) so we have plenty of soft balls that he can throw around the house and a jump-o-lene where he can just throw himself and get the deep pressure he wants. Robbie is a tough little guy and his dad of course loves playing rough with them so thankfully Patrick gets ways of satisfying these sensory needs. He loves to be hugged tight, too, and this is definitely my favorite part. =)

Balance and Motion
The vestibular system (located in the inner ear) is in charge of several things such as postural control, perception of body movements in space, gravity, attention, bilateral coordination, ability to cope with stress and auditory-language among other things. His balance and coordination aren't perfect. Heights, uneven surfaces, narrow paths, stairs... all these make him move with extreme caution. He bumps onto things and people often. Patrick can't ride a kiddie bike, and I can already tell it's going to take years before he is able to master that skill. He is much more sensitive and adverse to vestibular input than other kids. This sensitivity contributes to avoidance and hesitation with daily activities that involve vestibular input.

Sometimes it feels like Patrick isn't 100% aware of where his body parts are. If I tell Patrick to touch his cheek, he has no problem doing it. But if I touch my cheek, and ask him to imitate me just by watching me, he may touch the lip, or the forehead, and may take him a couple tries before he touches successfully the cheek. And if I were to cross my left hand all the way to right cheek... well, forget it, he is just going to raise one hand, then the other one, and touch his hair, then try with the other hand, then start all over...

Planning and Ideas
The difficulty in performing the tasks mentioned above are affected also by his struggles with planning and improvising. Patrick often fails to complete tasks with multiple steps and has trouble coming up with new ideas during play or other activities.  Motor planning plays a huge role in the way he approaches things and places. I know he struggles with this. He is not able to put on shoes or dress himself or to even take off his jeans without some sort of help. At first I thought it was just related to his low tone which caused fine and gross motor delays, but now I know it's mostly due to his difficulty planning.

Just to put an example, for awhile I had the Pack 'n Play filled with small plastic balls, so the kids could use it as a ball pit. One day, Robbie (15-18 months old) placed a stool next to the Pack 'n Play, he climbed on to it, and then he climbed into the Pack 'n Play. I was amazed that he had already figured out a way to get in without help, while Patrick (3 1/2 years old) hadn't all that time. On top of this, when Patrick tried to imitate Robbie, he got stuck climbing into the Pack 'n Play. I saw how difficult it was for him to decide which leg had to move first and how, and then what arm goes next... For Robbie there was no thinking, once he was on the stool, it took him a second to jump in. But with Patrick, the movements aren't spontaneous. He has to think it through, and then he struggles coming up with the plan and coordinating his own body to accomplish said plan.

Social Participation
I addressed Patrick's social skills on this post. There isn't much to add other than he recently had few episodes of being very uncomfortable in closed spaces with a lot of people. He also seems to be bothered by routine changes, sometimes with things so simple like placing my purse on the couch instead of the table where I usually put it, or his dad sitting on the right side of the sectional sofa instead of the left side, where he usually sits when we watch a movie. Not sure if these are social participation-related, but one thing I know is that two weeks ago he was having a really rough time being "out there" because of situations like these. He was having meltdowns almost every day and it was difficult on me to see him going through it. I know I was supposed to talk about it on this post, but this is already long enough that I will have to leave it for next week.

Enjoy your weekend!

Overcoming Behavioral Issues: Sensory Processing Disorder

Last year I blogged a series of posts related to Patrick's behavior. I called these series "Overcoming Behavioral Issues" and I identified 4 main reasons that were triggering Patrick's bad behavior:

1. Speech delay
2. Nutrition
3. Sensory issues
4. Medical condition

I wrote separate posts to explain with more detail his communication and nutritional issues, but I really never got the chance to talk at length about how his medical condition was affecting his behavior.

This week is the perfect time to resume the series, Why is that? Because this past Monday we had a really, really, really bad day. But before I tell you what happened on Monday, I think is important to explain what is Sensory Processing Disorder, or Sensory Integration Dysfunction.

I found the best explanation (everything in blue) on the SPD Foundation's website:

Sensory processing refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Whether you are biting into a hamburger, riding a bicycle, or reading a book, your successful completion of the activity requires processing sensation or "sensory integration." 
So basically, we are wired to respond to everything we feel and perceive through our senses. What we hear, what we eat, what we touch, what we see, and what we smell - everything is processed in our brain and then in turn this emits a response, like if we hear something too loud, we may cover our ears, or if something is too spicy, we may spit it out and get some water! 

Sensory Processing Disorder  exists when sensory signals don't get organized into appropriate responses. It's a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively. 
Imagine a classroom with 10 children, and suddenly the fire alarm goes off. Five kids get surprised and maybe a little scared, they immediately look at the teacher waiting for her reaction to explain what's happening and what to do next. Two other kids are too busy playing to get too concerned, they do notice the noise, but they just wait to see if it goes away. Two younger kids get scared and cry, but as soon as the teacher explains that it was a false alarm and everything is OK, they calm down. And then there is one kid, he panics, he hides, he cries and screams and shakes... it's hard to calm him down, it's hard to get him to listen and it takes a lot longer and much more effort to get him to stop screaming. This last child shows an overreaction to a loud noise, this reaction is an indication that the "cause" is provoking an "effect" that isn't within the norm, hence, it shows that there is a disorder in the way he process this sensation. 

Symptoms of Sensory Processing Disorder, like those of most disorders, occur within a broad spectrum of severity. While most of us have occasional difficulties processing sensory information, for children and adults with SPD, these difficulties are chronic, and they disrupt everyday life. 
My husband tolerates spicy food more than I do (and I'm the Mexican one, you would think I could eat a jalapeno and no complain!) but does my sensitiveness to spicy food mean that I have a sensory issue? No, it doesn't. The key to identifying the difference in "every person perceives things different" from an actual sensory disorder, is when that "different perception" affects your life. When it's affecting significantly the way you socialize, the way you learn and the way you are, that's when you know it stops being a normal thing and it becomes a more serious issue that needs to be addressed. 

Sensory Processing Disorder can affect people in only one sense–for example, just touch or just sight or just movement–or in multiple senses. One person with SPD may over-respond to sensation and find clothing, physical contact, light, sound, food, or other sensory input to be unbearable. Another might under-respond and show little or no reaction to stimulation, even pain or extreme hot and cold. In children whose sensory processing of messages from the muscles and joints is impaired, posture and motor skills can be affected. 

The child in that classroom who panicked at the fire alarm, may only have an issue with loud noises, while the sensations coming from his nose, mouth, touch and eyes are perfectly OK. While this child overreacted to the situation, there are also children with SPD who may show no emotion, no reaction whatsoever to a sensation that otherwise would cause reaction in most people.

Still other children exhibit an appetite for sensation that is in perpetual overdrive. These kids often are misdiagnosed - and inappropriately medicated - for ADHD. 
A child who is often pushing other kids, throwing things and actively searching for physical input, might be thought to have ADHD, when all he needed was to get his need for physical stimulation taken care of. These kids benefit from taking a break from the classroom activities to enjoy a few minutes of physical activity, and after receiving the input they needed, they get back to their classrooms and work perfectly fine along their peers.  

Often I feel like SPD is the new ADHD or the new Autism, in the sense that SPD sometimes is treated like a trend: More and more often kids are (mis)diagnosed with it. A child that's too shy has Autism; a child that is too active, has ADHD; and today, a child that may fall in either or has SPD. Do all the kids diagnosed with SPD really have a legitimate medical problem in the way they process their sensations, or are we not letting kids be kids anymore?  We need to be careful when applying any of these terms to our precious little ones, because there are kids who really have SPD, ADHD and Autism, and are looked down by other people who are so tired of all these disorders on the rise. On the other hand, there are many children that don't have these conditions yet are diagnosed and treated as if they did, causing real problems in the child. 

For the parents that believe their children may be affected by SPD, you can read this article that talks more about the trend vs the real issue. I encourage you to get your child evaluated by a professional Occupational Therapist who will be able to tell you if your child has SPD or something else, if anything. We have known about Patrick's sensory issues for a couple of years, even though he was officially diagnosed until recently. Coming to terms with "he actually has it" vs "he is just a child going through a phase" was somewhat easier for us because we have seen a scan of his brain. His MRI actually showed a somewhat messy and underdeveloped cerebellar vermis - the part to be believed to control the way we react to things. Luckily for him and for us, it isn't affecting all his senses, but for the senses that are affected, well, let's just say I had a real taste of it last Monday, and it wasn't good.  We had been managing his SPD just fine -learning what to do and what not to do... but last Monday was rough. It's just so hard to see your child suffering and not being able to help.

Stay tuned for the next post, this is To Be Continued...

Building friendship: A challenge for children with OMA?

I wrote on my last post about our concerns regarding Patrick's social skills, stating that he seems to be overcoming his issues slowly but surely. Today, Patrick doesn't mind being around children, and by "doesn't mind" I mean exactly that: He won't play with them, but at least he is not bothered anymore that they are next to him. Until recently, I thought the lack of engagement was due to his developmental delays: 18 months ago, kids his age were running and climbing, when he couldn't even walk; today kids his age are singing and doing pretend play, when he can't even make a 3-word phrase. These seemed like legitimate, almost obvious reasons as to why Patrick won't engage kids, but now I'm not sure what to make of it. 

Recently, a mother of a teenager with OMA came across my blog. She wrote me an email that got me thinking. Among other things, she wrote me this: "...The most heart breaking is her social skill. From 3 years old till now (15) she has great difficulty forming friendship. Whenever she attended birthday parties, she never participated in games or activities. She's most comfortable with kids much younger or adults. My daughter is much loved & protected by her family, cousins, friends of ours, but she has great difficulty in building friendship." 

Patrick is social, but also he is not. I would say, he is very selective whom he is social with. The thing that got me thinking from that email, is the part where she says that her daughter is most comfortable with kids much younger or adults. This sounds like Patrick. Patrick's last IEP (the school Individualized Education Program) had an observation from his teacher stating: "Patrick will watch children who are playing nearby and he will play near them... Patrick mostly interacts with staff members." Do you see the different approach towards adults vs kids?

When my sister and nephew were visiting, she pointed out how funny it was that when we were out and about, Patrick loved to say hi and shake hands to elderly people. Now that I think about it, I have never seen him spontaneously shake hands, or even say hi to any child around his age (other than his brother). I observe Patrick at the playground, soft room, water park... and realize, he doesn't like playing with other kids. He isn't mean to them, he simply doesn't engage.

It takes a little while for Patrick to be comfortable to engage an adult, but once he is comfortable enough, he can be the most charming, playful and fun kid around. But then again, he won't get this way with children, no matter how much time he spends with them (he was with his peers 3 hours a day, five days a week, for 9 months!) The only lucky child to get Patrick's attention and play time is his 18 month old brother Robbie. This could confirm that it is all related to his developmental delay: Patrick is at or above his brother's developmental stage -Patrick can take the lead, and Robbie will follow him, whereas other kids are significantly advanced that are not taking considerations towards Patrick's developmental delays.

If this is true, then it means that as Patrick's grows, and matches the developmental skills of other kids, he should have no problem making friends. I could think of this as a phase, but the situation of the 15 year old teenager rises the question if there is something else going on there. She is not 3 years like Patrick anymore. 12 years later, that mother is still concerned about her daughter not being able to make friends. Mother to mother, she asks me for any advice, but sadly I have none, because up until her email, I didn't think Patrick could continue to not engage people his age as he grew older. 

During this past school year, Patrick went from not wanting to play around kids, to being OK playing around kids, and I had hoped that in the upcoming school year Patrick would simply move from being OK playing around kids, to actually playing with kids. While this scenario may happen, right now I have no answers on how to help her daughter, so I'm asking any readers out there that have older children who have gone through this, to please let us know how have you/are you dealing with a situation like this one. From a mother to another, I can tell you that any advice, a word of encouragement, or simply sharing a common story so that she knows she is not alone in this, will be greatly appreciated. If you are a teenager or an adult with OMA who has challenges making friends, I'm sure this sweet 15 year old girl will love to hear your story.

My evaluation of Patrick's preschool year

It's been an unusual long time since my last post. There hasn't been any particular reason, but there has been definitely many things I have been meaning to write, and I hope I get to each of them in the upcoming weeks (months?).

Today I'm going to talk about Patrick finishing his first year of preschool. On the last day my husband and I went to the school to thank the teachers for all their patience and dedication to our Patrick. The teacher said Patrick was a very pleasant boy the whole year, and that he improved quite a lot, specially on his speech. She mentioned she is putting a suggestion to move Patrick, and another 2 kids from his group to the afternoon program. She believes these three kids have improved the most and would benefit greatly from more challenging activities, which are offered to the afternoon class. It isn't guaranteed that the change will happen, but it looks like a good possibility!

Patrick can count (sometimes) up to 10, however, he often likes to go by pairs. When he is getting ready to go down the slide, for example, instead of counting 1, 2, 3 and go, he says: 2, 4, 6 and go! We don't know why he does this, but I actually find it funny. He doesn't know his ABCs, and can't sing any song, but he is happy to do the body movements each songs invites (Head and Shoulders, Wheels on the Bus, Itsy Bitsy Spider). He is able to sort by colors, but he is able to name only 1 or 2 colors. He only differentiates circles from lines, not any other shape. He may be able to identify one or two letters, and this is just sometimes. His drawing is still very similar to that of his 18 month old brother. Based on this skills, I could say that Patrick wasted all his year at preschool, because, really, he didn't learn much, and also, he has learned these same things from me at home.

But I didn't send Patrick to special preschool to learn the alphabet, so to be honest, I'm not too concerned about all that. Right now, when it comes to Patrick's skills, my two biggest concerns are his language and social skills, and these were the main reasons why he attended preschool. When he started school, Patrick was just beginning to put two words together, it was very rare that you would hear "mommy come", or "baby eat." And if having a limited vocabulary wasn't enough, his pronunciation was very poor, too, making it difficult for anyone to understand. Today, his pronunciation of most words are close to how they are supposed to sound. He has mastered putting two words together, and he's slowly beginning to use three words, like "Mommy come here". Now I have a very talkative toddler, and I attribute that to the school. Every single day they sang at school, did pretend play with friends, learned new vocabulary -different from what he would have been exposed at home, and all of this was directed by special education teachers who knew, better than me, how to help him achieve all that.

In regard to his social skills, a year ago Patrick wouldn't play if there were other kids close to him. He would step back and observe all the time. If we were at the playground or the soft room, he would prefer to watch them play, wait for them to be gone (or at least not too close), and then he would imitate what the other kids were doing. Today, Patrick doesn't mind the other kids. He is able to play his own games while kids are next to him, and that's an improvement that I attribute to him being able to play, eat, sing, work... every single day with other kids at school. There is, of course, much room for improvement, for instance, it would be great if Patrick actually played with the kids, rather than just not mind that there are children around him, but I will talk about this on my next post. In the meantime, let me end this post with a few pictures of Patrick's school days.

Waiting for the bus

Patrick running to us after his last day of school

Patrick and his teacher!

We like to hang Patrick's arts and crafts. He likes to point and say "Packi did!"

We took a pirate boat tour on the Potomac to celebrate his last day of school

Pirates stealing the treasure! We better get them!

Patrick misses riding the bus, and says he misses his teacher and friends as well. Fortunately, this long school break happens during the summer (when the weather is nice and we can do all sorts of outdoor activities) so I hope he has been having as much fun with us as he seems to have when he is in school!

Overcoming Behavior Issues: Speech Delay

Patrick began babbling and saying "dadada," "mamama" and the usual cooing, around the same time other babies his age started. Before our kids were born, his dad and I decided that I would teach our kids Spanish and he would teach them English, and as Patrick was growing, I started to teach him a few words in Spanish. I had read somewhere that kids from bilingual homes usually are a little late on talking, so I guess I kind of expected all along that he would be a late talker. Late talker as in talking a few months after the average child.

Patrick, as of today, has the vocal skills of an average 18-20 month old baby. Patrick is 3 months short of being 3 years old. That's too "late" for what I had anticipated. While talking comes and develops naturally for most children, for other children, like Patrick, it doesn't.

I think it was until he was a little over one and a half years old, that I realized that his severe speech delay was looking like a real possibility. By then, we were all aware of his Oculomotor Apraxia and hypotonia, and the more I learned about his developmental delays, the more I realized "speech delay" was part of the bundle. When Patrick was 2 years old, his vocabulary was limited to mommy, daddy, babba (bottle), and to the sign language for the word "more." In the video below, Patrick is shy of 2 years of age.

As Patrick was growing, his frustration for his inability to talk was growing as well. The older he was getting, the more he was understanding, questioning, doing, and desiring. But he couldn't express any of that. I can only imagine how helpless one can feel in a situation like that. This was the reason number one to his screaming. You know how babies cry when are cold, scared, hungry, sleepy, thirsty, uncomfortable...? Well, Patrick, as the toddler he was, had turned that cry for a scream. He was tired? Scream. He was thirsty? Scream. He wanted to play? Scream. He didn't want something? Scream. He wanted something? Scream. Scream. Scream. Scream. The constant screaming would make me upset, which would then make him even more upset, and it would turn into a vicious circle from which I couldn't figure out how to get us out.

About five months ago, Patrick's vocabulary was limited to 6-8 word approximations, which made his therapists suggest to add more words in sign language to ease that frustration. So Patrick learned the sign language for more, I'm done/I don't want, and please. Ball. Ball. Ball. Ball. Ball. Ball... I had to repeat it dozens of times a day, while we were playing with the ball, until one day, there was finally a "ba." And that's what we had to do with many other words. Today, Patrick has about 40-50 words, most of them being mere approximations (nani = night night, tide = outside or inside, memi = Mary, nana = grandma or banana, didi = Jesus, na = Sam, pun = spoon, bapi = Patrick, pi = please...)

We had to teach him to point at things, too, to make it easier for us to know what he was talking about. Thankfully, he had finally learned to walk, so we taught him to hold our hands and take us to wherever was what he wanted (if he wanted to drink something, he would take us to the kitchen; if he wanted to go out, he would take us to the door, for example). He moved from twice a month therapies, to three times a month. Also, I attribute the improvement on his speech to the Omega 3s and the changes made in his nutrition that I talked about a few weeks ago.

Many children these days are late talkers, and I believe there shouldn't be any pressure on making them talk when they are not ready. However, Patrick was ready, he just didn't know how to. How do I know he was ready? Simple: It was affecting his daily life.  His very own self was ready to communicate, but his mouth couldn't do it, making him upset and turning aggressive towards others. I can tell that when we let him know that we understand what he is trying to tell us, it is easier for him to accept a "not right now" if it is something that he wants and we can't provide at the moment. He is more involved in making decisions of what he wants to eat or what he wants to do, letting us know when he has had enough of something... and all these moments go by without meltdowns. The screaming, throwing and hitting are very rare these days, and I'm so happy to have my happy Patrick again.

Speech (or lack of) wasn't only affecting his mood and behavior, but was affecting his learning progress as well. Let me share a fond memory from my Epistemology course when I was in college: We were asked to read a children's book called Pixie, by Matthew Lipman. The book is about a girl who, among other things, asks too many questions.  The funny thing is, that after the class read the book, I was dubbed Pixie (and I was called that for the rest of my college years!) because they said I asked way too many questions. Ha! Of all the numerous books I read during my school years, I think is a marvelous coincidence that this particular one is to this day stuck in my head, perhaps thanks to the nickname I got. But whatever the reason, the fact is that Patrick's new difficult behavior was making me think a lot about Pixie.

Pixie inquires into the connection between language and things in the world, which give meanings to everything in our daily experiences. In other words, Pixie is meant to show us how a child makes sense of the world as she learns new words. Children like Patrick, who find it difficult to express themselves verbally, will have problems learning things because of their inability to refer to them. Whether is with word approximations, sounds, sign language or pointing at objects, we taught Patrick how to refer to things (objects, emotions, people...) and ever since, he seems to be learning a great deal of things at a faster speed as he ever did.

Everyone keeps telling us that he will talk more once he starts school. I do believe this because the very first words Patrick said were during a trip we made to Mexico. My family is very talkative, and there are always a lot of children around, so there was non-stop talking all day long when we were down there, which I think got Patrick motivated. He is still unable to put two words together, however, I think it's emerging now. Couple weeks ago, he spent a few days with his very bright and talkative friend Jackie (happy 3rd Birthday, Jacqueline!) and ever since that visit, he has been making an effort to put two words together: "acusacu bobo" which means: __________ Lobo (something about our dog). Couple days ago I brought an Elmo toy into the room where he was playing, and as he saw me he said "momo, si" (Elmo, sit), as he was pointing at the floor where he was sitting.

Jackie and Patrick playing baseball

Jackie and Patrick watching the Gorilla at the Zoo

Awhile back I was anxiously awaiting for the day when I would finally hear from Patrick "I love you, mommy." I'm not anymore. I know he loves me. What I don't know is what's his favorite animal, what he wants for dinner tonight, what he wants to be when he grows, what makes him sad the most, what he thinks of his little brother. When the day comes that he talks, God knows I will let my old "Pixie" get the best of me, and will ask him a universe of questions, because I know there is so much in that brain and in that heart of my little boy, that I just can't wait to know all about him!

Overcoming Behavior Issues: Nutrition

Patrick is a skinny kid. He's always been above average in height. In weight however, was average or above average as a baby, but under average as a toddler. Patrick looks like my husband when he was a child, but with a darker skin tone, eyes and hair. We like to say that Patrick is a Mexican version of Tim. The fact that Tim was so skinny, but healthy as a child, made us think that Patrick's low weight was only a matter of genes.

Patrick was breastfed from newborn up to the age of 8 months. I think I could have done it longer but I had gotten back to work for a few months then, and it was getting more and more difficult to manage both. So I started giving him Similac. He started eating solids at about 6 months, but it was quite a slow process, which I'm relating to his low tone in the mouth (it was difficult for him to chew and swallow some foods). Patrick didn't pass stools everyday. Even when he was breastfed, he would go 3-5 days without passing a stool, but it didn't seem to bother him at all, so the doctor said we shouldn't worry. When he turned 1 year, we began to give him whole milk, and more foods were added to his diet. That's when I feel the real constipation problems began.

Without getting into too many details, I can say that he was in severe pain when trying to pass a stool. Because of it, he was eating less and less every time. We thought lactose was the problem, so we tried so many milks for months, from lactose-free, to almond, soy and coconut. The problem seemed to ease a little for awhile but it always came back. We took him to his pediatrician and it was suggested that we gave him Miralax. Miralax was doing the trick often, but I didn't like the idea of having a toddler taking medicine to be able to go potty. We also had to give him suppositories when the problem was really bad. So we kept trying things, like reducing the intake of bread and pasta and adding more fruit and fiber, reducing milk and adding more water... but nothing seemed to eradicate the problem.

Patrick started to be a really picky eater, occasionally eating amazingly well, but most of the times being chased to get him to eat. He loves everything eggs and enjoys fresh fruit and berries, but getting him to eat lunch and dinner is usually a battle. About a year ago, we tried adding Carnation Instant Breakfast to his milk, and it seemed to be working at first, but after a couple of weeks, he didn't even want to eat his fruit or yogurt snacks. The doctor figured that the Carnation was probably making him too full and instead of helping, it was making things worse. So we stopped the Carnation, and we continued to hope that each day would be one of those lucky days when Patrick happened to eat everything we gave him.

I got a wake up call when at one of his appointments we realized he hadn't gained weight in the months prior. And then after that we noticed he started to lose weight, so we made an appointment with a nutritionist and a gastroenterologist at Children's Hospital. They ran a number of tests, to see if he had any sort of allergies or intolerance to gluten (celiac disease), but everything came back OK, and we were told (again) that Patrick needed to be on Miralax daily. I still hate the idea of having him on Miralax, but like the doctors said, by trying to avoid to have him take medicine, he is not eating, hence missing out on nutrients that are important for his development. They were right on that, because now that he is passing stools everyday, his appetite is significantly better, so it's easy to get him to eat his veggies, fruits, meats and such.

He is still a picky eater sometimes, but most of the times he eats well. He is back to having Carnation Instant Breakfast and looks like he is slowly putting on some weight. Best of all, he isn't suffering due to the constipation issues. It broke my heart every time he had to go through that pain. But now I have my happy Patrick again. His mood is so much better now, which makes him be more willing to sit and play with me nicely for long periods of time, learning new things. The difference is amazing, like two completely different boys. We also added Magnesium: My husband sprays some on his skin at night few times a week, or we add Epson Salts to his bath. It makes him so relaxed, and a happy little boy.

I found in several forums moms talking about giving Fish Oil to their kids with developmental delays. Most moms then would say that their kids were doing significantly better (like talking more, or improved motor skills), however, some of them didn't want to attribute the improvements to the Fish Oil, but rather say the improvements were due to their kids getting older. I figured I didn't lose anything by trying so we added Fish Oil to his morning shakes. After a couple of occupational therapies, where Patrick played and behaved like a perfect little boy for the whole sessions, his therapist asked me what did I think had made the difference, to which I responded that he was eating significantly better every day. I told her about the magnesium baths, and then I told her about the fish oil. And as I said that, I heard myself saying "I'm not sure if that really made any difference though, maybe he is just getting older, hence more mature". That's when I remember these other ladies suggesting that the Fish Oil wasn't the real cause of their kids improvements, but only a matter of coincidence. I realized then that it couldn't be a coincidence that all of our kids happened to "grow and mature" when they started to take the fish oil. So I'm going to give Fish Oil its very own credit, too.

If you have a picky eater like mine, chances are his nutrition is causing some of the behavior issues you are dealing with, along with some of his developmental delays. A better nutrition didn't "cure" Patrick, but it's definitely speeding up his development. He isn't constipated any more so he is happier, and he is more often with a satisfied tummy, therefore he is willing to relax and pay more attention on how to do new things that were past due, like making puzzles. Instead of throwing the puzzle pieces to anyone who passes by, my boy is finally using the pieces for what they were made: making puzzles!!

Overcoming Behavior Issues: Causes

It's important to note that the behavior described in my last post wasn't just occasional, or typical of the "terrible twos". The screaming, hitting and throwing was an every day thing, occurring for the most part of the day. It was affecting his daily life, as he was unable to use his time for playing, learning and socializing, hence increasing his global developmental delay. It's also important to mention that the concern raised because of the environment provided to Patrick: A home with two loving and caring parents, with access to a healthy an age-appropriate fun lifestyle.

When all this "sudden" change of attitude happened, we were already receiving services from the Infant and Toddler Connection, and his therapists were very helpful in dealing with this issue. They insisted on asking me why did I think he was behaving one way or another. Understanding why Patrick behaved the way he did, was the key to help him improve his playing and learning process.

The first step in figuring out why was Patrick constantly throwing, hitting and screaming, was to become extremely observant. Every time he would scream, I needed to find out what was upsetting him. But it goes beyond simply knowing what he wants. You see, when he wanted to go outside, sometimes he would come, grab my hand and take me to the door. Other times, he would throw something at me for the same reason. So, we have the same kid, the same desire, but two different scenarios. What would make him act peacefully one time, but aggressively other times? To find that out, I had to observe what was going in his environment every single time he showed a bad behavior. Every time he hit someone, I needed to pay attention to the whole situation: What was he doing right before he hit? What was I doing? What is he throwing? What time of the day was more likely to do it? In which places? Around which people? Has he been sleeping well? Eating well? Any significant routine changes? Same for screaming. Same for hitting. Being able to answer all those questions, led me to answer the big question, why.

Four main reasons surfaced:

• Patrick is trying to communicate. Patrick's ability to understand is superior to his ability to execute and speak. This causes frustration. Loads of it. If he wanted to play with a child, he didn't know how to tell him, so he would hit him. If Patrick wanted to get my attention, he would come and throw something at me. If he was tired, or bored, he would scream. 

• Patrick's nutrition. Patrick has been dealing with constipation issues which caused a lack of appetite in him. He started to lose weight, to the point that he gained only one pound in six months, and lost that pound the following two months. We don't operate the same way when we are too hungry, or stomach sick, compared to when we have a satisfied belly, right?

• Patrick has sensory integration issues. Sensory Integration is the neurological process that organizes sensation from one's own body and from the environment and makes it possible to use the body effectively within the environment. Patrick doesn't necessarily have Sensory Integration Disorder to the full extent, but, he does process a few sensations a little different from most kids. 

• Patrick's medical condition. Patrick's cerebellum is slightly smaller and a bit disorganized as shown in his MRI. The cerebellum plays an important role in motor coordination, attention, language and regulates fear and pleasure. Patrick's behavior issues are not only limited to bad behavior, but also to "odd" behaviors, such as panicking when feeling fear, and feeling fear to random things such as small pets, or stuffed animals. 

Each one of these reasons deserves its own detailed explanation so expect a post about each bullet point in the upcoming weeks. In the meantime, if your child is dealing with behavior issues, start observing closely what is causing such behavior. Become a critical observant of your child just like I did, you may be surprised with the answers you will find.

Overcoming Behavior Issues: Patrick's behavior.

Patrick has improved so much in the past month. It's like someone took Patrick away and brought him back to me a year later, more mature, healthier, happier. But it all happened in one month, and it happened right here at home.

A little bit of background, Patrick was a super good and happy baby (read hypotonia = happines) up until last winter, when he became a very difficult child. I assumed that because he had learnt to walk, he would be all happy running everywhere, playing at the playground, making friends and learning a lot. There was a lot of running, yes, but paired with hitting, screaming and throwing, every single day, most of the day. 

Patrick's play was very immature, too. At 2 years of age, he didn't know what to do with puzzles other than banging and chewing on them. And that was the case for all of his toys, like cars, blocks, musical toys, learning toys... you name it. Patrick liked looking at books, but he didn't like hearing the stories. His favorite books were the ones with no stories, the ones that are meant to teach children a new vocabulary filled with just pictures of a theme: animals, body parts, baby things... no stories. He didn't like any of the kids TV shows (I didn't see anything wrong with that -until I realized it was because he couldn't comprehend and follow what was going on on TV) and he would still place in his mouth about anything that came across, just like a baby would do when trying to explore. When other kids were around, he wasn't able to join them in their play, rather he would just step back and watch them, or do his very own thing. Now that he was free to move on his own at the playground, instead of going up and down the slide with the other kids, he would just run, run, run... and wouldn't engage.

Patrick isn't a shy kid. He likes people and he is very charming at public places, always saying "bye" with a huge smile to anyone that walks by. So why he won't play with other kids? Why he won't even play with his toys? He would get frustrated VERY OFTEN when he couldn't do something, and the anger would be expressed by screaming, hitting and throwing things at others and me, a 7, 8, 9 months pregnant woman. It was very difficult to deal with this new situation and I just couldn't figure out why was Patrick acting like that.

I began to think about the mean kids from my childhood, that used to hit and bully other kids, that used to get bad grades at school, getting in trouble all the time, and that because of their attitude, other kids feared them, so they almost never had friends. I could picture Patrick becoming one of those mean kids. You somehow think that they are that way because their parents don't pay them attention, or because there are problems in their homes, or maybe, they are just so spoiled that they turn into real brats. But now we were raising one, and I couldn't understand what we were doing wrong.

Just few months before, I was concerned about Patrick being bullied at school because of his developmental delays and his Oculomotor Apraxia, and now it seemed like Patrick would actually turn out to be the bully, which, of course, isn't a better scenario. Where all this violent spirit came from? There is no violence at our home, so where does he learn these things? Are time-outs really not enough for some children? But how can I spank him to show him that hitting is wrong? How can I punish him by not watching TV or playing with X toy, when he doesn't like nor care about TV and has no favorite toy? Giving him the talk of why he should behave well was like giving the talk to a 5 month old. 

I was running out of ideas and patience, but luckily we were already working with the Infant and Toddler Connection, and his therapists had experience working with children like Patrick. They gave me great ideas, we figured out other ones, and all will be talked about in my next post.  

Overcoming Low Muscle Tone: Professional Help - Therapists

On my previous post, Overcoming Low Muscle Tone: Professional Help - Doctors, I wrote that Patrick's neurologist suggested that he started Early Intervention services to help with his developmental delays.

Of all the things that we have done to help Patrick overcome his low muscle tone (and his developmental delays in general), Early Intervention Services have been the most helpful resource. It's probable that your hypotonic child is already receiving Early Intervention, but in case you are new to this, here is a brief explanation (from their website) of what they do:

The Infant & Toddler Connection of Virginia provides early intervention supports and services to infants and toddlers from birth through age two who are not developing as expected or who have a medical condition that can delay normal development. 

A child with a developmental delay or differences in development is not developing like other children his age. The delay or difference can be in one or more of the following areas:

- Thinking, learning, and playing

- Moving, seeing, and hearing

- Understanding and using sounds, gestures and words
- Taking care of one's self, including eating and dressing
- Developing relationships 

Supports and services focus on helping parents and other caregivers know how to find ways to help the child learn during everyday activities. These supports and services are available for all eligible children and their families regardless of the family's ability to pay. 

Every state provides this service, and if your child needs assistance, you shouldn't have any problem getting it. An initial interview/observation is scheduled which will help them determine if your child is eligible. Also, they will do an informal visit to your house to ensure that your child is provided with a safe environment. Afterwards, you will have a meeting to decide what type of services your child will receive and with what frequency. You are also assigned a coordinator who will oversee the work of the therapists and respond to your concerns.

Once you are all set, the therapist(s) will go to your house for 1 hour, observe your child while playing, and will give you suggestions on what to do to help improve his developmental delays. You are supposed to work on these tasks on a daily basis. Every 6 months you, your coordinator and the therapists will have a meeting to evaluate the progress, create new goals, and determine if a change on the frequency of therapies is needed, and if any additional therapists should join the team.

Below, Patrick's experience with the Infant and Toddler Connection of Virginia:

a) Physical Therapist: Patrick began taking twice a month therapies. Most of the suggestions I have written on this blog are actually ideas that his therapist has given me all along. Patrick is doing so great on his walking and running that therapies have been reduced to only one a month. Also, suggestions from her therapist now focus more on his fine motor skills.

b) Speech Therapist: As I mentioned in the last post, the developmental pediatrician at Children's Hospital suggested that Patrick took speech therapist. The coordinator agreed and Patrick began taking therapies twice a month. Shortly after, Patrick had his 1 year evaluation with the coordinator, who suggested to increase therapies to 3 times a month. Given that she sees Patrick more often than his physical therapist, she has also been helping us with some of Patrick's behavior issues. We are now in the midst of finding out what type of problem is causing Patrick's speech delay, having verbal apraxia as a possibility.

c) Occupational Therapist: Patrick does not take occupational therapies, however, we met with one couple days ago. As I have mentioned briefly in previous posts, Patrick's throwing, screaming and hitting was starting to get out of control. Also, due to his constant mouthing (placing toys in his mouth) and banging of toys, his ability to play with toys, learn and engage with other kids is limited. His body (joints) need pressure/hard input, and so all of this made us believe that Patrick had Sensory Integration Disorder. After a written test I had to do, the occupational therapist scored it, and met with me (and the speech therapist) to give me the results. Patrick appears to have some level of sensory integration disorder in some areas, but the occupational therapist suggested we didn't address his issue as SID, but rather, we should focus in the particular areas that we need to work on and will give us some ideas on what to do to help him. As she said it "Sensory Integration Disorder are big words and you may get lost in it if you see it as a whole picture. Let's just work in the mere areas he needs help, and it will be less overwhelming for you and Patrick". I was very happy with her approach, and I'm looking forward to the report with detailed suggestions she will send me shortly.

All of the therapies that Patrick receives currently are provided by the Infant and Toddler Connection of Virginia, and are provided to us at no cost. Luckily, Patrick's delays aren't severe, so private therapies haven't been required. Patrick won't be able to receive these services after November, when he turns 3, but he will continue to receive tailored services at the Special Education Preschool. It's possible, however, that if Patrick's speech delay has little improvement after he starts preschool, we may add private therapies.

Patrick's little brother will be here anytime!

My pregnancy with Patrick was overall good, and as lucky as I could consider myself with that pregnancy, this one has been even better! Both pregnancies have been different from each other, not crazy different, but definitely not the same. I think this baby moves more than Patrick ever did (which isn't so great when you are trying to sleep) but he doesn't get hiccups as Patrick did. With Patrick I had nausea 2+ months, but with this baby I only had nausea 3 days, literally. I feel like baby was telling me "hey, I'm here, you are pregnant!" because once I took the pregnancy test at the third day, the nausea disappeared.